Monday, November 30, 2009

The head nurse said not to worry

We called the Oncology center this morning, first thing, and explained our thoughts and concerns about Bill's blood. Bill was wondering if he could get his blood retested today.

But the head nurse, with whom Bill spoke, said that there was no need, nothing to worry about, that it happens all the time.

The reason Bill had the impression that it DIDN'T happen all the time was because the nurse who only got a few goopy clumps of his blood out after trying repeatedly said she had never seen anything like it in her entire career.

She is in her fifties.

But we shall bow to the experts, I suppose, and just wait until Thursday when he goes in for Gemzar and will get his blood tested then.

Not that I don't trust the experts absolutely, but ((((((((((halp!)))))))))

Sunday, November 29, 2009

Bill feels okay, but the gravy thing is still freakin' us out

I got a large number of requests for updates after the post about Bill's blood turning into liquid paraffin.

So here's a short one.

1. No, we weren't kidding in that last report. Or exaggerating. His blood was in clumps in the syringe. It was NOT runny or liquid.

2. I found a lot about it online (please factor in that a little knowledge is a dangerous thing, and that I am only going by what I THINK the medical reports have been saying, when I've googled into the lingo-intensive articles. In other words, I could be WRONG here).

Turns out that coagulated blood is a rare but well-known side effect of Cisplatin. How it works is like this:

Platelets are things in the blood that nurture the "endothelium." The endothelium is the lining of the arteries. Endothelium is like Teflon and makes the arteries slippery so blood moves through easily. Cisplatin had wiped out a vast amount of Bill's platelets. Therefore, his platelets were not nurturing his endothelium and when that happens, the endothelium gets out of wack and the blood clots. I think they call it a "coagulation cascade" which is a bizarre medical term (BMT), not unlike "exquisite pain" which is another BMT.

So...Bill's platelets having taken a severe hit, his endothelium went rogue, and his blood clotted up.

Is this about as dangerous as looking down the barrel of a Taliban AK-47 while making up fun-poking limericks about men who wear skirts?

Why, yes it is!

So tomorrow we plan to call the oncologists and ask about getting him more attention, and possibly pre-emptive anticoagulant therapy before the next time this strikes. He still has TWO more rounds of Cisplatin in his future.

3. Thanksgiving was hard for our Roy Rogers, though. Everything tasted like metal, and he kept almost throwing up. And there was lots and lots of noisy partying going on day and night because a galaxy of 20-something kids was (were?) here, orbiting everywhere, laughing, squealing, dancing with the pups, cooking weird foods, inventing macaroni and cheese pizza with alfredo sauce on it...oh!... and accusing me of cheating at poker when all i did was whisper to Bill as to whether I should fold with two kings, which I didn't do, thanks to Bill, and which did cause me to win the entire game.

More when the next shoe drops.

Love and thanks for those prayers.

Beth

Thursday, November 26, 2009

More Blindsiding Drama for the Buckaroo

So on Wednesday before Thanksgiving, Bill and I drive to the clinic for a simple little Gemzar drip, estimated to take about 15 minutes.

I actually said the following to him on the way there: "Last time we tried this, we ended up sitting there for 7 hours while they used the flipping jaws of life on your kidneys, right? Ha ha ha!. Now THAT was a surprise, but now we're done with surprises," said the foolish, foolish I, then waxing foolisher immediately thereafter by uttering this statement: "There's absolutely NOTHING that can go wrong today, though."

WARNING: IF YOU HAVE A WEAK CONSTITUTION OR ARE EATING ANYTHING RED, LIKE, SAY, CRANBERRY SAUCE AS YOU READ THIS, DO NOT CONTINUE. STEP AWAY FROM THE COMPUTER. PROCEED IMMEDIATELY BACK TO YOUR DINING ROOM TABLE AND READ THIS TOMORROW.

So we sit down and the nurses call Bill's name, and he goes over and sits in the chair to have his blood drawn.

He's there a long, long time (I'm around the corner, can't see him).

Finally, here he comes and sits next to me. He's holding out his arm. It's wrapped up with a series of bandages from his wrist up to his elbow.

"What the heck is that all about?" I say to our cowboy.

"They couldn't get any blood to come out. They tried all different spots but the blood wouldn't come out. Finally they got a tiny bit and sent it to the lab. The nurse said she's never seen this happen before."

"Never seen this? But people have trouble all the time with their veins being hit right to draw blood."

"That wasn't it," he said. (If this were a spooky movie, the music would get really creepy RIGHT NOW.) "The problem is that my blood has coagulated."

"WHAT?!?!?! You mean, in the syringe???"

"No. In my whole body. All my blood has turned to goop. My blood looked like red pudding, and they couldn't get it out, and they've never seen this before."

Well, nothing like an image of THAT sort to relax a wife whose normal level of calm in the BEST of circumstances is along the lines of a bomb squad expert who, while disassembling a nuclear device, encounters the sound of an unexpected balloon pop.

Shortening the story here, it was 4 hours before we got out of there. Bill did NOT get his chemo. The test results came back with such an insane reading of his blood contents that they refused to believe it and wanted to retest him.

But to do THAT, they had to call in the head nurse to try to get enough blood out.

Not only could this nurse not get the blood out, but they had to attach an extra suction device to the syringe to try to FORCE some blood out, and when the blood came out...I am not exaggerating, now...it was completely congealed!

Jello. Heinz ketchup. Cranberry sauce. Cherry pie filling.

His blood was not liquid! It was gravy!

I was completely horrified.

The nurses were trying to act calm, and say assuring things--they're wonderful about that--but. I mean. WHAT WAS GOING ON?

So they got about 1/10th of a syringe full and gave up, and sent it to the lab marked *ASAP*.

It came back and showed that Bill's body was no longer running on blood but had become a Toyota Prius fueled solely by restaurant grease.

Okay, seriously, though, it showed that his blood was pretty much guano on a shingle.

So they sent him home.

Home?

I kind of thought that wouldn't have been my first move.

I was thinking more like the intensive care unit until his blood was actually liquid again.

And I never should have googled this when we did get home, because after what I found out about blood congealing during chemo, we're both sitting here in a panic, with the thermostat turned up to 110 degrees lest the air temperature fall too low and his blood solidify into one giant cinammon candle.

Or a lifetime supply of cranberry sauce.

Happy Thanksgiving!

Friday, November 20, 2009

Toxic Kidney Man

Our favorite cowboy has toxic kidneys now.

Nephrotoxicity.

Well, technically, I guess his kidneys can't be said to be toxic, themSELVES, or that would make them poisonous. But I thought if I said his kidneys are intoxicated, you might think he drank too much alcohol.

Hmmmm. In a way, that could be true, only it wasn't alcohol and he didn't drink it--it was cisplatin and it came in through his elbow artery. (Beatle song: It CAME in through his elbow artery...)

Wow. I need to be more awake when I write these things.

Anyway, yesterday, he went to get a simple dose of Gemzar, the humble chemo that takes a half hour to drip and causes no problems.

Hold it. Back up. This week held thrills even BEFORE he went in for the Gemzar.

If you remember, the last time he got Cisplatin--Drug From the Ninth Circle of Hell--it wiped his white cells down to a nice simple "ONE".

So this time, they started giving him Neupogen shots in the arm every day after he got the Cisplatin.

Neupogen can be considered a friend. But it is a friend that you hope you never ever meet. Neupogen does to your bone marrow what a strawberry pop tart does to a toaster if you hold it down, which is to set everything on fire and then explode.

So this week, Tuesday night, Bill's bone marrow caught on fire and exploded. Metaphorically. He woke up in childbirth. Metaphorically. And as most people know, childbirth is an experience that would very closely match the definition of an exorcism.

It was like that.

He was literally yelling with pain. His pelvic bones felt, he said, like molotov cocktails gone wild, and the pain was radiating around and around his abdomen.

That first yelp will do a number on a spouse who is sound asleep beside you.

I now officially have post traumatic stress disorder.

But that's another day's topic. ;)

So we got him through that by 5 am, using only tylenol.

And today (Friday), he gets ANOTHER one of those shots.

Luckily, I recently purchased some ear protection that is suitable for a firing range. So I should be okay. Our dogs, however, may end up walking around with incurable shakes and x's where their eyes are supposed to be.

Beth. Bring it back. You've drifted too far from the shore, girl.

Okay. Ahem. Back to yesterday's Gemzar drama.

So yesterday, he gets his routine little blood test before the Gemzar. The results comes back like this: UH OH.

His kidneys have taken a major hit. His blood sugar is in the pre-diabetic range, his white cells are so numerous that they are plotting to overthrow New York City, and his red cells have run for cover, rendering him horribly anemic, so he can't get enough oxygen in through his lungs.

He said he will never again utter the phrase, "What doesn't kill you makes you stronger." Because the way chemo works is, what can make you stronger can also kill you.

SO.

Yesterday involved SEVEN HOURS in the chair getting salt water pumped in and in and in and into his body to try to repair his kidney damage.

I asked the nurse for a printout of his blood test results so i could Google them. Turns out his kidneys aren't processing the urine OR the protein, so it's a double whammy (completely whacked BUN and Creatinine scores for those of you who know this stuff).

You can see how it is for US, now, in perceiving his illness. The cancer seems like a mere distant thought. The chemotherapy becomes the disease.

As for me, I'm just happily stressed out, whacked out, stunned, sad, scared, and wandering around this whole bizarre situation like Odysseus on the wine-dark sea, missing the days of Troy and hoping I bump into Ithaca sometime soon.

Thank you for your prayers, thoughts, and light.

Bethica

Sunday, November 15, 2009

Cowboy Bill's Photo Shoot (Hat Pix) Tomorrow

Bill is feeling...um...okay...

Actual dialog.

"Bill! How do you feel?"

"Weak and shaky. An overwhelming metallic taste in my mouth."

"Do you want to dictate anything else I can tell your pals?"

"No I do not. Oh, wait. Green Bay just won. You can tell them that."

"Bill: What symptoms do you have?"

"I feel feverish, but I'm not. Metallic taste. Weak and shaky. That's all I got for you!"

"Man, can't you say something funny?"

"Green Bay beat Dallas."

"You are a dud."

"Okay. Here: After this spring I want to be known as Bladderless Bill."

Wow. Sorry, peeps. That's all he will say.

You can lead a Packer fan to a blog, but you can't make him something something.

Okay, I wasn't sure how to finish that sentence, so I asked Bill.

"Bill. What word could I put there? 'You can lead a Packer fan to a blog but you can't make him' WHAT?"

"Punt. You can't make him punt."

"PUNT? That makes sense? You can't make him PUNT? People will get that? No one will get that. I'm going to write down that you suggested that but I'm going to indicate that I wasn't really behind it."

Done.

Beth



Her Bethness

Friday, November 13, 2009

Short update: bigger update tonight

Mister Bill got his Gentle Gemzar yesterday (Thursday) and is having no effects yet, thank heaven. But in two hours, today (Friday), he starts the Kaiser Wilhelm Gustav Gun Weapon of Chemo, the Cancer Killing Death Star to tumor cells: Cisplatin.

He is in major dread.

Now that he knows the following about Cisplatin, I can post it (I don't post things he doesn't know, to avoid freaking him out): This drug is so toxic that he needs three hours of saline solution (salt water) pumped through his body before they'll even give him the drug. That part you knew, but here's more: It's so vicious that if a few drops were to leak out on his arm, they would chemically burn right through the skin and leave a thick, permanent scar!

The preceding paragraph was to satisfy the sensibilities of any individuals who may feel that my blog entries are too happy and frivolous, given the gravitas of the subject matter.

But on to lighter fare!

I'm going to take a camera and take pictures of Billybob in chemo wigs for you.

Well, maybe we'll have to hide in a conference room to do that, as even I, Madame Inappropriately Silly, wouldn't want to make any one nearby feel uncomfortable, since wigs are actually NOT a funny subject.

But BILL in a wig IS a funny subject only because he never had hair in the first place, so to start wearing a wig during chemo....oh, Beth, let it go...they GET it, already!

Later, taters! I'll write again tonight.

Love,

Beth

Wednesday, November 11, 2009

Cowboy Billy back in the saddle tomorrow

Cowboy Billy starts chemo round #2 tomorrow, Nov. 12 (Thurs).

Thursday's chemo has no noticeable ill effects on him.

Friday's chemo, however, is Genuine Military-Issue Montana Whoopass.

Hold on to your pony, Billy Bob! Everybody loves you!

Friday, November 6, 2009

Bill finishes his "resting week" and prepares for the November battles

Is it frustrating to come here and find no new posts? If so, I could put up something short every day. Bill can tell you that I have NO problem generating words.

And we haven't even gotten into the posting of photos.

Wouldn't it be fun to see Bill in that David Bowie wig?

Anyway....oh, and about knowing when a new post is up without checking manually--if you click "Follow" on the right-hand side of this blog, all that will happen will be that you'll get a notice in your email whenever a new blog is posted.

Okay, so, the update:

Bill is completely normal right now, although still being careful to avoid sicknesses. This is his week #4, of round #1 of chemo, during which he rests.

This coming Thursday, he gets the November motherload in his arm: Gemzar on Thursday, and the dreaded Cisplatin on Friday.

By Saturday, the inside of his bladder is going to look like the movie set for Predator v. Alien. Transitional Cell Tumors pleading for their worthless lives, Carcinoma In Situ Patches swearing they'll never do it again if we'll only have mercy.

But no mercy shall be found!

And in a completely non-linear thought line: Another up-side to chemotherapy has been identified:

THE HANDICAP PARKING PASS

Ohhhhhhhhhhhh, heck yeah! Bill has a 6-month pass for handicappuccino parking, and we are loving it! He can now park outside the door where he teaches, instead of a half-mile away. It's really helpful when he is queasy and out of breath.

In closing, I will show you a clip from an email he wrote to his pal of 50 years, JG, which email comprises Williamic variations on the theme of handicap parking passes:

"Re: handicap pass. One, they rule. Two, how about a *golf* handicap pass, whereby any player who achieves the age of sixty-five and who is hobbled in any way is automatically considered scratch. A score of 125, say, is considered par. And the Senior Tour has to take you on and you play from the red tees with limitless mulligans from said tees and limitless "do-overs" from the fairways and greens.

"I'm getting excited about this proposal. (Not excited enough to get out of bed, mind you, but excited nonetheless.)

Bill"


Love and Light,
Beth

Friday, October 30, 2009

Everything Went Well on Thursday. (Except the World Series.)

Bill had his blood test Thursday morning, and his body had heroically recovered to a completely normal blood count.

So he got to have a little blue doo-dad stuck in his left arm and taped in place, and they squirted a variety of beverages into it. He got saline solution, anti-nausea stuff, steroids, some other stuff, and then some other stuff, and finally the Gemzar (gemcitabine). That's the chemical that is the gentle one that doesn't bother him.

Though his hair is thinning. And that's SAYING something.

I was looking at the wig collection they have, and I found a David Bowie one that I thought would look good on him. Brown and blonde, short (brown) around the bottom, and on top, sticking up 5 inches, real thick and blonde and punk rock looking.

I dared him to tell the nurse he wanted to try it on, and then to wear it all during chemo and see if she would keep a straight face. He told me those nurses are probably trained never to laugh at the wig selections people make. I said I wanted a job that involved training nurses not to laugh at bad wig choices. Dude. If there really is a job like that, I actually do want it.

Then I told him that maybe it would be easier to just take 5 barbie doll heads--the kind with long blonde hair--and glue them onto the top of his head in a line from front to back, creating a blonde mohawk effect. This suggestion he seriously did consider.

Yesterday, he had such a hilarious character getting chemo and sitting next to him. It was an older fellow, around 80, in jeans and work boots and a checkered flannel shirt. He said he's lived up in the mountains all his life--calls himself a true hillbilly. The accents on the locals here are just fabulous.

This guy had everyone on our side of the Chemo room laughing so hard telling stories in that gorgeous and rarely heard accent. One of the things he said was that he was proud to say that in his entire life, he had never once hit a woman.

The nurse replied, "That's because you're a smart man."

He said, "Wail, truth ee-uhz, ah awlmos dee-id hit a womun wuntzt. Ah was a-standin in a parkin lot, and this-yer womun was a-fahtin' [fighting] wiff her boyfreeund, and she got maddern da dickens at 'im, and 'stedda hittin' HEE-UM, for sum reezun, she decided she'd juss take it out on me an walked up 'n slapped the livin' far [fire] outta me. I dun took off runnin after that womun, an iffn I'da cawt her, I'm sure I'da hit her. Heck, if I'da founda rock, I'da frowed it. Good thang for me, there warnt no rocks, and she was fastern I was."

........

The night before, I was reading this novel in which an old man says to a young man: "Here's the secret of life, and I'm going to tell you, but you're not going to understand it for a long, long time, till you're much older. Ready? Here it is: Everybody is Christ. And everybody is crucified."

If that's true, and I'm not saying it is, but if it's even KIND of true, then that might explain why something deep and mysterious and strangely beautiful always seems to be visible when Bill is at chemo and when all the fellow sufferers there are having conversations with each other. While they are each in some degree facing the danger of death, nonetheless, at a time like that, they want to make some kind of contact with the co-sufferers beside them.

Was there a little of that going on between the thief on the cross and Jesus?

I don't know, but maybe it was something like that.

Wednesday, October 28, 2009

Bill's prayers--WRONG kinda prayers--answered!

Apparently, every bladder has a silver lining.

In this case, the silver lining for Billy Bob is called "The Neutropenic Diet"--and Bill just can't stop snickering with delight about what it requires him to eat.

I'm, well, having difficulty believing there is a diet like this for sick people.

Brief informatory digression:
A neutropenic diet (nu-tro-PEE-nik) is for people with weak immune systems, like Bill's. The diet protects them from bacteria and other harmful organisms found in food and drinks. An immunity-compromised body, like Bill's, can't protect itself from bacteria, so on the days he is neutropenic, he needs a special diet to keep him from being exposed to the many, many things that can get into your body through food.

When he first printed the diet out and started reading it, I could hear him laughing his head off in the back room.

"What in the WORLD is so funny?" I asked him.

"This diet. It's the greatest diet ever known to humankind. There really is a God."

Then he proceeded to read me his favorite sections from the diet. I had to look at it myself to make sure he wasn't tricking me, to get me to stop feeding him all the extreme-health foods I was shoving his way: things like organic, triple virgin, hydroponic, vegan prunes and yogurt and korean cabbage. Grown by contemplative monks in Asia. Well, that's a slight exaggeration, but not much.

He starts off reading me THIS from his neutropenic diet:

"Avoid all fresh fruits and vegetables. Choose donuts, sweet rolls, waffles, French toast, potato chips."

"WHAT?" I howled. "It couldn't possibly SAY that! Gimme that!"

He reads on:

"Avoid salad bars, fruit bars, raw nuts, and all yogurt. Choose chocolate milk, Velveeta cheese, cakes, pies, cookies, commercial ice cream, butter, mayonnaise, jelly, syrup, hot dogs, bacon, sausage..."

"NO! WAY!"

"Way!" he yells back. "I can't eat any foods that might arrive in our kitchen with bacteria on them. I can only eat processed foods, frozen foods, pre-packaged foods. No more raw broccoli! No more raw carrots! No more Jerusalem artichokes!"

Oh. My. Gosh. I looked at the diet and he was right.

Well.

I am still trying to bend my mind around this, but it does make a bizarre kind of sense. Although, WHAT!? He is now eating exactly the kinds of foods I have scolded him for, for lo these many years, and he is doing so with an oncological nutritionist's imprimatur.

There is no justice in this world.

Well, in mine, anyway.

There's plenty in his.

And his tastes like Jimmy Dean frozen egg-cheese-sausage biscuits with jelly toast and donuts for breakfast.

Mine tastes like prunes and yogurt and korean cabbage.